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Posted by Philip on 18 June 2017, 11:23 am in , , , , , ,

Living on the edge

On Sunday my PA was sick and didn't arrive at 9.30 as planned. I called and texted and finally received a reply at 10.45am. Meanwhile I texted a couple of my other PAs — one was in West Auckland and couldn't make it for an hour, another didn't reply and another was on a yoga retreat.

A silouetted person stands looking over a cliff

I eventually texted a friend who lives nearby. I began writing this while I waited for her, to help me put my shoes and socks on, take my pills and then go out to brunch.

It's a bit of a myth that Individualised Funding (or self-directed funding as it's also known, where you manage your own disability support) is a panacea when it comes to autonomy and independence. While it is far superior to relying on home care agencies, unfortunately it's not failsafe.

Even with four people making up what I term my "Morning Crew", I still struggle to prevent situations like Sunday from occurring. All are part-time or contractors, so all have other jobs and clients to attend to. The crack in the system is that I can only offer 22 or so hours a week over seven days to four people, meaning that I cannot offer sustainable employment.

I've often considered finding someone else nearby with similar needs to share PAs to try and create a more viable proposition. There are two snags:

  1. Most likely we will need support at similar times; and
  2. A match of personality types is essential for the role so, someone with whom I get on may not gel with some one else.

So, it's an imperfect situation which, at times, fails. Not often, I'm glad to say, but that takes a lot of communication and co-ordination on my part.

Luckily, or maybe I should take more credit than luck, I have great people who truly understand how crucial their role is in my life. Even so, with all the goodwill in the world from the Crew, the reality is I sometimes still feel like I'm living on the edge.

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